Words of Silence...Welcome to My Sons World

I have decided to explain more about Mr 5's condition as it, as all conditions/disabilities do, affects other aspects of his life (and ours).
By the age of 2 you are not talking, you are attempting to talk with ummm, errrr, ummmmm together with intonations which sound like you are trying to have a conversation but in another language. Your granda would say he "talks like a Chinaman" (apologizes to any one of Chinese background or origin) You do not walk until 14 months and spend a lot more time awake than asleep. You would sleep for exactly 45 mins in the day from the time you are born, we attended two sleep clinics (one day stay , one overnight stay) to little or no avail. Your night sleep pattern was 7.00 and you would wake at 0500. When you are still feeding at nights you will wake every 3 hours. "Roll over feeds" did not help with the early waking. I suspected something by the age of 2 but little can be done as males are "late developers" in speech. Remember, this was my second child and I could not possibly put it all down to his sex. We found a speech pathologist and whilst she was good, she was more intent on play orientate speech( which did not always work) and telling me I was doing a "wonderful job" with him. After a visit to the local MCHN with no:3, she asked about your progress and I let her know that I thought something was amiss and was not happy with the SP we were seeing. Over time we refered onto a developmental pediatrician, and by 3 and a half you are in the local early intervention group. Initially your diagnosis was developmental verbal dyspraxia (DVD)with global developmental delay(GDD), that is to say you are delayed in all major gross and fine motor areas as well as speech patterns being irregular. You are unable to tell any one you loved them till he was almost 4, 97% of what you say is unable to be understood by others because the "mispronunciation" is irregular. That is that what might be "bup" for cup , will next time (5 minutes later, 5 days later or 5 months later) be "tup". There is no consistency with the mispronounced words unlike a speech impediment such as lisping. We are lucky that we interact a lot with our children and listen carefully (most times) to what he says so we can try and ascertain what he is telling us. People say I understand him extremely well and always have, but I am with him the most so I had to learn. The condition also encompasses "lost words" that is the word or the knowledge of the word may be there one day but it may "disappear" on another day ...The pathway for the retrieval of that word is lost,ipso facto so is the word. We have yet to have this happen on a permanent basis, only on a irregular temporary basis.

As you can imagine the frustration for a two year old learning to speak is a lot, let alone a two year old who cannot make his needs known or clear. Put that sort of pressure on three year old along with delayed motor skills and toileting and you have a problem. You have lashing out, you have determination to get things for himself rather than ask, attempts to go where he wants instead of asking...Because it is easier than trying to make yourself understood and feeling you have not achieved anything.
At four, you are a boy who is reluctant to try anything new, painting, drawing and art work you just avoid because you feel you cannot do it and are now so very aware of the skill levels of your peers and the perceived inadequacies of your own. You develop safe guards for not attempting these things, crawling about with you forehead on the floor and inciting others to follow suit, throwing things and an old favorite (when you are accomplishing toilet training) needing to go to the toilet.
By five, you are so very aware of things, so alert to the differences between yourself and other children. The fact that your speech is still hard to understand and that the other children call you "baby" hurts you, you are unaware of the consequences of your actions so are a risk to yourself and others, you will try to avoid any or all activities involving structure and or sequencing (apart from jigsaws which you are a absolute wizz at) you'll open doors, windows in an attempt to go outside when every one is inside, and vicea versa. Your toileting skills are where they should have been 18 months ago, but the other children still torment you if you have an accident. Learning new skills is something you do not like to do and numbers and letters are beyond you right now. Your interests revolve around Toy Story characters Buzz and Woody, Thomas the Tank Engine and trains in general, cars and bikes. You dislike ball games but can kick a soccer ball left footed. You like to climb but get stuck on the descent as you forget where to put your feet. You like to try and talk with the other children but they ignore you or use you to chase them when no one wants to be "it " in a game of chasey, they do not reciprocate and take a turn. You stand sadly by as birthday party invites are handed out in front of you and on one occasion stood inline awaiting yours, to be told.."I don't want you at my party"as the mother stood by and shrugs as if to say " what can I do?".

You will struggle to learn most things and the biggest smack in the face your mother got was when a MCHN said "you know he'll never go to uni, don't you?". Well, my darling, blue eyed dream,,, you will do what ever you can and we will get you by whatever means possible. Uni is not the be all and end all..If you want it, you will get it. Because the biggest part of you is your heart and within that lies the strength of determination...You are determined enough to open child proof gates...You can do ANYTHING.